Dad’s Point of View – Ch. 1, Fear and Pride – May 10, 2017

This is the first in a short series of article written by my dad, the parent of child with HPP diagnosed after living what we all thought would turn out to be a perfectly normal life.

We always knew something was wrong. We thought it was depression, or ADD, or maybe she just wasn’t naturally academic. Annalise was just too fatigued to complete her studying, and the level of fatigue varied with stress. She had occasional injuries, but what do you expect from a no-holds-barred soccer and volleyball player?

I can imagine nothing harder than for a father to raise an active daughter who wants to reach for the stars on everything, but sometimes cannot make her body do it.

Nor can I imagine anything more rewarding than to watch one’s daughter cross the stage to get her college diploma, or win the Badger State Games in shot put, or build an accurate six-foot-tall human heart, or become known as the best I-V needle stick in the business, or hold your arm as you give her away to the next man in her life.

Annalise works occasionally for a very wonderful rheumatologist (remember that “best I-V needle stick”?) whose brother is a pain management doctor. That doctor just happened to have been talking to an endocrinologist who happened to have heard about hypophosphatasia.

A referral was arranged, and Annalise had her blood test to compare to two previous tests. They found an ongoing pattern of low levels of alkaline phosphatase. A diagnosis of hypophosphatasia (HPP) was recorded. Annalise was – very briefly – overjoyed, and I was nearly as happy for her. Finally, there was a name for the enemy robbing her strength and energy. Finally, there was proof that she was not a hypochondriac or a malingerer.

Her mother, a superb RN who had fought the medical profession (and anyone else who didn’t believe Annalise) brought us back down to earth as she studied all she could learn about HPP, and we began to realize the enormity of the task facing Annalise in fighting this enemy. Nonetheless, fight it she has. Read her blog entries to learn more about that fight. And I will add more articles to tell you about the effect her HPP has had on me.